Dialysis Journey thus far: The good, the bad and the ugly

The Good, the Bad, and the Ugly was a 1966 spaghetti western starring Clint Eastwood that is generally accepted to be one of the best films ever produced. It made his career and others too.

 Today’s popular culture embodies the film’s title as an idiomatic expression typically used when describing something thoroughly. That is, the upsides or good, downsides or bad, and that which could have or should have been done better, the ugly. In this context, I pen the following about my Dialysis Journey thus far, having started on 9/30/2022.

Good:

• I’m here. However you dice and slice it, dialysis is life-supporting. Without it, I would be long gone. It is working, and for that, I am thankful.
• Fresenius Stock. In support of the company providing me with life-sustaining services, I chose to invest modestly in their stock at a 500-share level. On 1/20/2023, I bought these shares at $18.26 per share, for a total of $9,132.50. Today (5/10/2023), the shares are trading at $24.46 for a total gain of $3,097.50. To a degree, as the company goes, I go. I’m going OK.
• Met nice people & Supportive team: Along the way of my dialysis journey, I have met a host of people, both in and out of the medical profession, that have treated me exceptionally well. I appreciate this most and hope I can live up to their expectations. In particular, I am very adorable and impressed with the sincere care and treatment provided by my Dialysis Team. They are always there, almost like Big Brother but in a supportive role which I deeply appreciate.
• Takes a village. This statement is derived from an African proverb that means an entire community of people must interact with children for those children to grow in a safe and healthy environment. Recently when talking normally with a neighbor in front of our home, I went down with Orthostatic Hypotension. Seemingly in a matter of seconds, his wife was beside me, and a few seconds later, neighbors were there attending to me, and my wife was called. In all, at least eight people were attending to my needs, including calling the EMS and exporting me to our home. In my neighborhood, there are many angels watching over me, for which I am grateful. It’s a good thing in my case.

The Bad:

• Changing habits. The critical need for dialysis had the greatest impact on my daily life, what I could do, when, and how. I am tied to the schedule of the dialysis requirement rather than my environment. This has impacted when I go to bed, how I sleep when there, when I get up, what and when I eat, where I go, and what I do and can do once I get there; everything. It is a massive behavioral change that no amount of classroom effort will prepare you for.
• Social life. I am on Peritoneal Dialysis and have a BMW X5 SUV. I could load up the X5 with dialysis gear and travel to just about any place in the US I wanted to for up to several weeks duration without needing to stock up with dialysis disposables. This is but one aspect. I find that I cannot make rather early-in-the-day appointments without seriously curtailing or rescheduling my dialysis treatments. Same thing later in the day. If we go out with family for dinner and stay too late, I run into the fixed and firm requirement to get on the Cycler or pay the piper the next morning by having to stay on it longer. It is a very unforgiving schedule that is unbudging and intractable.
• TV schedule. This may sound trite, odd, and even funny, but having to be on the Cycler by 09-9:30 PM to get up at a reasonable hour in the morning curtains TV watching in the evening. Luckily we stream everything and can start to watch a show, stop it, and continue the next evening. Still cuts into our family time in the evenings.
• Glucose, weight. We, I say we because the following involves my dialysis team also, are looking for the sweet spot in the strength of my dialysate. The effort involves a balance between acceptable swelling of the feet, hands, and face (edema), and the strength (for me, a 1.5 or 2.5 dialysate) to remove fluid during dialysis. A confounding variable is that as the sugar content of the dialysate goes up and bodily fluid content increases, my glucose readings do also leading me to increase my insulin intake. So we have a critical balancing act between dialysate strength to pull out enough fluid to keep edema in check versus glucose and retention. Compound this with if fluids get to be too low, blood pressure goes down, leading to fainting because of orthostatic hypotension. These three variables interact and cannot be captured in a linear equation, differential or not. It is a little bit of this, a little bit of that, to see what works. Today at least.
• Medical meetings. I attempt to keep up with my lab results and, in general, my health state in preparation for my monthly meetings with my dialysis team, but try as I might, I seem to miss the boat. What they are concerned about, or not, don’t jump out at me as problematic. What I question at the meetings from my research as being potentially problematic are, in general, glossed over. To some extent, I feel like a third wheel—an object for scientific inquiry at best.
• Supplies. On at least two occasions, I have received monthly supplies from Fresenius that I am positive I did not order. I’m talking multiple boxes of dialysate. While Fresenius, for me, has done a great job giving us a heads-up on delivery, and ordering has been straightforward using the Patient Hub app, the process still is manual and cumbersome. With all the data available via the Cycler, seems automation or at least a recommended list of supplies should be generated in this information age of advancing artificial intelligence.
• Lack of info on new cycler. In April 2022, over a year ago, Fresenius announced the release of a new cycler, the VersiPD, to replace the existing Liberty Cycler. Here we are, over a year later, and nada, zip, zero. Here’s what they said it would provide: “Designed from the ground-up (sic) to enhance the patient experience, VersiPD will allow patients to enjoy restful sleep through its almost silent operation, fewer disruptive alarms, and night mode. The cycler has the capability of more personalized prescription programming to meet the individual needs of a broad range of patients. VersiPD offers a large, intuitively designed touchscreen, as well as embedded videos with audio guidance to assist patients step by step through setup and treatment. The cycler battery and custom cart facilitate mobility around the home, which can further improve a patient’s quality of life.” We’re still waiting, and waiting, and waiting????

Ugly:

• Cycler alarms. I have reported extensively on the excessive amount of drain alarms the Fresenius Liberty Cycler throws off. You can reliably count on alarms 3/4 of every night. Unsat!
• Fresenius Tech Support. As previously reported herein, Fresenius Tech Support is an oxymoron in terminology. I have spoken with them on three occasions concerning drain alarms. Their last solution is to turn the alarms off. They are no “support” whatsoever and distract from an otherwise mutually beneficial relationship with their parent company.
• Sleep. The impact of dialysis on sleep is multifactored. I have had to adjust my sleep schedule, my sleep positions, my sleep regularity, my sleep patterns, my sleep awareness to drain alarms, my concern for alarms bothering my wife, and so on. This is one of the areas most affected by dialysis.
• Fainting. As previously mentioned, I have experienced low blood pressure and fainting while on both hemo and PD. It is not a fun experience and should be avoided at all costs. It is impactful in many ways. My wife has, since my single episode while on PD, taken to walking with me on my morning walk with our Golden Retriever Dickens. I bought her an electric bike for Christmas. Recently I purchased one for myself so I could accompany her on rides in the Plantation where we live. She has nixed this, hopefully for the time being, while I “prove” my stability and lack of fainting so she feels safe in my ability to ride the bike.
• No end in sight. You can say there is an end if I applied for and was accepted for a kidney transplant. I’m still on the fence. I have not been able to reconcile that at my age, 84, someone else could better employ the scarce asset of transplantable kidneys.